What’s the Big Secret to a Great Day in Autismland? (#254)

Charlie had a great day from the time he woke up, eyes bright as the sun shining in our living room, till–after telling Jim on his own “I want Daddy move!” to better glimpse the pictures on his dad’s laptop–he fell asleep in our bed, his precious photos of his old therapists nearby. His ABA therapist was determined to make the session a success and he must have given Charlie six or seven piggy back rides up and down the stairs between working on reading and language programs. At speech therapy, where Charlie, his expression serious if a bit befuddled, did his best to say his sw‘s and st‘s and identify objects by function and feature; during a game of catch, he spontaneously said “throw ball to me!”. He was most pleased to choose a bag of organic frozen French fries from the freezer case and spent a good part of the evening teasing me by opening the freezer door to try to gobble up the remaining half of the bag.
My fellow–sister–autism parents have been noting how the season’s change from icy winter to sunnier-still-cool-and-a-bit-damp-days heralding spring may be a culprit in the disrupted sleep patterns and night wakings of our children. The historical record of my journals reminds me that Charlie has often struggled in February and March. Some years ago, while reading Lisa Lewis’ Special Diets for Special Kids, I found it interesting that she thought her son might have Seasonal Affective Disorder, as my commadre MothersVox commented.

I keep track of the facts and minutiae of Charlie’s days in a journal that I have kept since he was a baby (in other words, I am technically onto the 11th or so notebook of Charlie-data). In keeping this journal, it has been important for me to write down (1) exactly what happens, no matter how bad, ugly, and awful, and (2) something good that happens. Even on the worst possible days, Charlie has always come through with some sweet gift of word or deed.

What the latest data revealed was that (apologies for the nitty-gritty) from Friday afternoon to Monday evening he must have been severely constipated and was unable to, as ’tis said, eliminate. Over the past 8-plus years, I have often noted that a big elimination has been preceded a few hours earlier by a really terrible behavior squall. So on Tuesday I doubled Charlie’s dosage of a probiotic. Just giving him more nutritional supplements is never the complete answer–those piggy backs rides from the ABA therapist and the good work of his teachers at school are the real medicine–but Jim and I have done best in helping Charlie when we have stumbled onto an interdisciplinary mix of therapies , stayed resolutely open-minded, and not let any autism ideology obscure our thinking at the expense of helping Charlie’s gastrointestinal and synaptic functioning.

When Charlie is well, we are too. Still, Jim and I know that, when Charlie is struggling, we need to circle the wagons–to gather our forces–to concentrate our every effort on him. At the top of our current agenda every day is to get him into a new school that can do for him what his current school, scheduled to close in June, has done. I was supposed to be going to California on Friday morning to give a paper at a conference on Ancient and Modern Narrative: Intersections, Interactions, and Interstices, but–in the hope of keeping Charlie together—I am not going; Jim is also cancelling travel plans.

In Autismland, it’s Charlie–it’s first things–first. How else can I keep the Charlie-data in my journal for next Monday’s visit to the pediatric neurologist where we hope to have a thorough discussion about medication, neurological testing, the possibility of seizures?

The title of my paper is “The Curious Odyssey of the Boy in the Day-Time: Homeric Echoes in Mark Haddon’s The Curious Incident of the Dog in the Night-Time” and its basic premise is no secret: “The Curious Incident of the Dog in the Night-Time is an epic like Homer’s poem–the novel narrates an odyssey in a world of neurological difference.”

In other words, Haddon’s novel is a fictional version–one among many–of our long journey in the night- and day-time in a beautifully different world. In Autismland.

5 Responses to “What’s the Big Secret to a Great Day in Autismland? (#254)”
  1. mom-nos says:

    “First things first” and second, third, and fourth as well. I’ve also cancelled a trip to a conference scheduled for the end of next week. Too many things that are out of my control have come Bud’s way lately; it’s up to me to take control of the things I can.

  2. gretchen says:

    Boy, I sure never thought that I’d be talking about this stuff on the internet, but…

    Henry, too, sometimes has behavior squalls, resulting in being sent to his room by himself for awhile. Next thing I know, I find him on the potty, requesting “some help wiping.” Definitely a correlation…

  3. Ennis says:

    Hmmmm … brown rice in place of white? I’m a stranger to Autismland, but … as somebody who has travelled around the world, and comes from a culture where people discuss bowel movements, constipation is something I understand. Maybe a bit more fiber would even things out ….

  4. SquareGirl says:

    Elimination is a talk I am extremely familiar with…it’s one of the first things we talk about when discussing behavior. I work with parents who also record the minutiae and they have similar findings regarding seasons and elimination.

  5. zilari says:

    I am so glad that you are observing and noting things like this (that is, behavior issues having strong correlation with physical discomfort).

    I do have to wonder how many autistic humans are institutionalized and / or heavily sedated simply because someone did not have the insight to look for something that might be prompting outbursts.

    One thing that is SO true of individuals with autism is that we often have difficulty interpreting and responding to physical signals. I am 27 years old and only a few months ago learned the difference between being “too warm” and being “scared” — they both felt the same to me, and this was complicated by the fact that I did not realize people could get too warm in the wintertime.

    What looked like a “panic attack” or meltdown was really just me getting overheated and not realizing that having a glass of water or removing my jacket could help.

    I shudder to think of people like me being in the wrong place at the wrong time, and having some “behavior” interpreted as willful or manipulative rather than a confused expression of physical discomfort. It is wonderful to note parents who work hard to interpret their child’s signals and the successes that can come of this.

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